Wednesday, October 26, 2016

Celebration of a birthday on earth and in Heaven

Cole is finally six and couldn't be more excited.  He was lucky enough to celebrate his birthday for an entire week!  We had Pop and Nana over on his birthday, took him to Cheesecake Factory over the weekend (he loves cheesecake), had his party with his friends and cousins the next weekend and then celebrated with his Grandma and Grandpa after his party.

He decided he wanted a party at his Dojang (Tae Kwon Do School) and share his love for Tae Kwon Do with his friends and family.  Majest Martial Arts does a great job hosting parties and all the kids had so much fun.  They started with a demonstration for the kids to see how well trained black belts kick boards.  Then they took a class so they could all break a board themselves and learn some Tae Kwon Do moves.  They even asked mom and Cole's Uncle Pat to break boards and they did !

The kids also had free time to play on the moon bounce and take a ride in the Majest limousine.  And a party wouldn't be a party without pizza, fruit and a cake cutting with a Korean sword!  My sweet boy decided instead of asking friends to bring him gifts he would make donations to the Ronald McDonald House in Akron, OH.  We will be going back in December and plan to take the donated gift cards to deliver them personally.  We look forward to being able to help other families who will need to stay there.

As tradition continues, we chose to light a lantern in memory of our sweet Kendall Kaye.  Unfortunately the weather did not cooperate on her angelversary this year so we moved the celebration to the following weekend.  It's always a somewhat difficult evening, but it's also something the kids have started to look forward to. They don't ask as many tough questions anymore so that makes the evening a little more relaxing. The sting is not quite so difficult, but the loss is still an ache in your heart that never really heals. Reagan has started writing notes on the lantern now that she can write.  Cole did ask how the lantern actually gets into Heaven...and of course I had to break the news that it's not quite as easy as going up in the sky or I would have done it already :)  He is so curious and I love it.  The other day he asked where the heat comes from in the car.  When I told him it comes through the vents he said, "no, how does it actually get hot."  An explanation of coming through the vents was not sufficient. Luckily Johnny is very patient and does a much better job explaining things like that than I do.

Other than school and activities being busy, life was pretty uneventful until this week.  Cole is unfortunately suffering from three days of head aches. I'm trying to work through a good routine with the school to call when they think he needs medicine but not send him home just because he says it hurts.  It's a harder formula to develop than you'd think.  Unfortunately he vomited on his desk at school today and hasn't stopped telling me about it.  We are hopeful tomorrow will be free of pain for him.  The neurosurgeon does not think it's shunt related given the pain is not persistent, but we are, of course, monitoring him closely.  For the last three days the pain is on and off from about 8am until 2pm and then he seems fine after that.

We are headed into the tough Fall doctor schedule so there will be lots of updates coming.  Hopefully they will all be boring !!  Both kids will be seeing their neurosurgeon and neurologist.  Cole also has an appointment with the low vision specialist and Reagan has an appointment with the orthodontist. All in the next week and a half!  What was I thinking?!

Monday, October 3, 2016

Ophthalmology Follow Up and Update on Healing

We are just over a week after surgery and Cole is doing very well.  The blood has started to dissipate from his sclera (the white part) and the swelling has gone down almost completely.  He has done very well explaining his surgery to people he meets and was given an opportunity to share with his class on Monday morning.  We all continue to notice less shaking although we've also noticed his eyes seem to sometimes not align correctly. We are monitoring this and plan to talk to Dr. Hertle about it if it continues. This could mean that the muscles were not tightened correctly.

He had a follow up with his regular opthalmologist, Dr. Jeffries, on Monday, and she was very happy we had followed through with the surgery.  She said his eyes were healing as expected and saw no signs of infection.  She did a vision test and said he seemed slightly improved.  It was a somewhat disappointing appointment, however.  Although Dr. Hertle said we have a lot to look forward to with visual improvements up through the age of 15 years old, Dr. Jeffries said that over time the muscles will loosen and the shaking will increase again.  I've asked other nystagmus patients in the Nystagmus Facebook group about this and several said they have had this problem.  And so the roller coaster continues wanting to feel progress and hope and yet continually being reminded that the future is so unknown.  And so we continue down the road less traveled and pray that we are being led in the right direction.

Next on our journey is to consider contacts.  So I contacted Cole's optometrist, Robin Alexander at The Eye Center where we get his prescription filled to ask about contacts.  She has been AMAZING over the years helping us choose frames.  She said she wasn't familiar with having children as young as Cole getting contacts and although she can fill them, she had a lot of questions I couldn't answer.  We also will have no coverage for these since we will need to use the vision benefit for his frames.

I mentioned the challenge of having him fitted for contacts to the nurse when I made the follow up appointment with Dr. Hertle and she suggested scheduling an appointment with the optometrist at Akron Children's to have him measured for the contacts.  Given his eyes are still healing, he wouldn't be able to wear them yet anyway.  So we are scheduled to go back December 6th.  We don't want to tell the kids yet, but I plan to fly up with Cole.  Reagan is going to be very disappointed when she finds out Cole gets to fly on a plane.  Perhaps we will need to find a good excuse to take a trip somewhere!

Next up?  Cole is turning six!  Wow...

Friday, September 23, 2016

Nystagmus Surgery Trip Day 4 ~ Discharge, headed home and next steps!

WE ARE HOME!  It feels amazing to be back home as a family and in our own beds tonight.  It was a long week, but it really flew by quickly.  We woke up this morning at about 5:30am to Cole crying in pain.  The doctor suggested not waking him to give medication so it was expected that he would wake up with some irritation.  After getting more medication and a new cold compresses he settled down and went back to sleep.  Johnny and I, of course, were still pealing ourselves off the ceiling from not knowing what to expect from the crying.  More blood on the pillow?  A problem that needed a trip to the ER?  Of course we were briefed on all the possible complications and they were all running through our heads.  Luckily it was just "normal" pain and even better...we could fix it with medication!  Unfortunately it was much harder for us to fall back asleep.  Through all the medical issues we've been through the hardest parts are when there is nothing that can be done and you feel completely helpless in fixing the pain or problem.

We woke up in time to get to our appointment with Dr. Hertle at 8:45am.  We needed to wipe down our room, vacuum, put all the sheets and towels in the laundry and remove all trash.  We let Cole sleep until the last minute, made our donation for the accommodations, packed the car and headed to our appointment.  Luckily there was virtually no wait once we arrived in the office.  He wore a pair of sun glasses they gave him the previous day since he pupils would remain dilated for several days.  As soon as he walks outside he stops and covers his eyes - it is very painful for him.  Since he was able to open his eyes the nurse ran through simple tests having him look at letters on the screen again.  Although it was much harder than on the day of testing, he was able to answer with about the same size letters.  You could tell he got discouraged, but he worked really hard at trying to answer her questions.

Next Dr. Hertle came in and immediately engaged Cole and asked how he was doing.  He showed Cole an app on his phone to gauge the shaking in his eyes and the head tilt.  He said he sees a lot less shaking but there was still some head tilt.  He also said that he did 10 surgeries this week and statistically 1-2 of those will not be successful and may need to be repeated.  Unfortunately we may not know this until we have a follow up appointment with him and complete the testing again.  We may get some inkling if we don't see any decrease in the shaking, but he is hopeful that we will.  He has asked that we return for a visit in 2-6 months.  He said to expect the redness to continue for 6-8 weeks but the irritation should lessen significantly by the end of the weekend.  Cole is doing a great job telling everyone he meets that he had eye surgery...which is good, because the whites of his eyes are completely red right now. It really takes you off guard when you look at him and you have to double take.  I love that he feels comfortable enough to talk about it though because it will help him when he returns to school on Monday.

In addition to repeat testing, he has recommended the contacts for the reasons mentioned in yesterday's post.  He wrote a new prescription and suggested we get it filled immediately.  We have a regularly scheduled follow up with Cole's regular ophthalmologist on Monday so it's perfect timing.  He would also like us to consider giving him Baclofin.  He said we should wait 6-8 weeks so that we can get a clear idea of what progress we see with only surgery, but then adding the medication later.  He is about to publish an article that studies the progress of 85 patients after a combination of 1) surgery, 2) contacts, and 3) Baclofin. I've spoken with several patients with Nystagmus through a Facebook group who have chosen a combination of these so it is very interesting to learn this new information.  Our currently plan is to talk with Cole's ophthalmologist Monday and see if she concurs with these suggestions.  We plan to schedule a follow up appointment with Dr. Hertle in November or December and wait to consider medication until after that appointment and retesting.  Overall the appointment was very positive and he really gave us a lot of hope for with regards to Cole's long term prognosis.  He said that it isn't out of the realm of possibility that he may drive a car one day and he also said he sees no reason for Cole to learn Braille.  He said there is no harm in doing so, but that he expects him to be able to learn without it.

After our appointment we made a quick stop for breakfast since we let Cole sleep until just before his appointment then headed back to VA.  He was doing very well and we continued to give medication throughout the drive.  We had him all snuggled up in his blanket so he could rest.  We did stop for lunch and although he ate, he seems to get tired easily.  We headed to pick up Reagan from Nana and Pop's house in Leesburg and she was sad to leave.  She told us all about her visit there and showed us "her" room.  We were so blessed to have them watch her so she didn't have to miss school and so that we could focus on what Cole needed.  We headed home, unpacked, and went to pick up Shelby (our dog).  The kids were super excited to see her. So thankful our dog trainer and her Weimaraner kept her this week.  She has been wiped out since she got home!  Needless to say, we had a quick dinner, showers and the kids were in bed.

I will post an update after we meet with the ophthalmologist Monday.  I also created a short "before" video to try to capture the shaking and plan to take an "after" video so we can see the difference.  I will try posting those once he has healed enough to get a good video. Thanks again to everyone for their prayers!  We feel very blessed that surgery went smoothly and we are seeing some improvement already!

As I close my post from this week I feel compelled to share feelings from last night that I struggled to express then.  Hopefully I can express them now in a way that is understood by all and sensitive enough for those who can related. When we told Cole he was having surgery to help him see better he said, "I see just fine."  My purpose for this blog is not only for family and friends, it is for my children as they get older and for others who may travel this journey to feel less alone....less lost.  As I lay in bed with Cole last night I couldn't tell when he was awake or asleep because he didn't open his eyes.  He would lay still then all of a sudden say something when I thought he was sleeping.  He had no sight so he couldn't be entertained with TV or with his iPad.  We tried listening to the movie Cars, but it didn't hold his attention very long without the visuals.  I asked if he wanted to listen to music and he said no.  He listened as Johnny and I conversed asking many clarifying questions because he had no visual cues.  "Johnny, can you pass me another one."  Cole, "another what?"

Cole asked his dad to get him a Robin toy and dad came back with Batman too.  As I opened the package he asked which was which because he had no sight.  I ran his fingers over Robin's boots, over Batman's pointy ears and over the buttons down Robin's shirt.  I was so intrigued by the difference in my relationship with him by not having sight.  It completely changed our conversations.  In no way can I say that I understand the perspective of a blind child's parent, but for a very short period of time, I realized how drastically different that parent must be to help their child experience life. I catch myself pointing out sunsets or birds to Reagan and cringe when I realize Cole cannot share in these experiences.  Dolphins, boats, and rainbows.  I will ask if he can see something and he will say yes as he is looking out the wrong window.  I often wonder if he is embarrassed he can't see it?  Is he worried I will be disappointed? Obviously I wouldn't be but I find myself torn - do I avoid pointing things out that are so beautiful to prevent these feelings?  I share this tonight because I think it creates perspective for all of us.  And it makes me realize that instead of avoiding it, I should explain it in a way he can understand - as a parent would for a child who is blind.  Do we all do enough to describe the world to our children?  Authors do this all the time. That is what makes a good book hard to put down - when you FEEL what the character feels or SEE what the character sees.  Last night made me realize we really should do this with everything in life. It is just one more reminder that every experience brings new perspective....

Thursday, September 22, 2016

Nystagmus Surgery Trip Day 3 ~ Akron Children's for Surgery

Well the big day is here and Cole was a champ...a true Ironman.  Although the plan was to sleep in, the construction crew woke me up at 5:30am and got Cole up by 6:30am.  We had an easy morning in the room and then ventured down to the family room and put in a movie and played with a few other boys who were staying here at the Ronald McDonald House.  I was very worried Cole would struggle not having food after midnight, but he only asked for a snack a few times and did very well without.  He insisted he wear his new jersey that we bought last night - seemed fitting since we call him The Cole Man.

We walked over to the hospital and arrived by 12pm and met with the nurse to take vitals.  Upon arrival everyone was very edgy about his cough.  The nurse and tech were very skeptical and said it would be up to the anesthesiologist whether surgery would move forward as planned.  Johnny and I both think he walked in to the room with a plan to cancel.  Luckily, though, he listened to Cole's lungs and had him cough and said he didn't see any problem with it.  We reviewed Cole's LONG history...AGAIN...and got him changed and ready to go.  I was prepared for the tears as he was escorted away by the nurse and Child Life Specialist, but as Johnny said, Cole was voted "ladies man" last year at school.  The look he gives her before they walk out is priceless.  He had to be reminded to give his mom and dad a kiss good-bye.  He was all smiles!

We walked out at about 1:07 PM and surgery lasted just about an hour.  We met with Dr. Hertle in a consult room after the surgery and he said everything went smoothly.  He said Cole's left eye looks pretty good considering...but that the right eye is not in very good shape.  Nothing we didn't know already, but he did confirm the ROP did no internal damage (only damage to the periphery where it is expected). He also said that he expects Cole to see progress in his vision up until the age of 15 years old.  That was really good news.  He thinks his vision is probably closer to 20:300 (improving from the 20:500 or 20:800 we've heard before).  He said that Cole has Periodic Alternating Nystagmus and therefore he recessed all four muscles during the surgery.  The testing showed that he looks at something straight on until his eyes get tired, then he tilts his head to the right to get a different null point until he tires and then tilts his head to the left for yet another null point.

We talked about the cause of his low vision and Dr. Hertle said all his limitations are not caused by the nystagmus.  He said the majority is due to the developmental disruption from premature birth.  Some is related to the bleed and pale optic nerves.  Again, nothing new but good to have confirmation from a second source.  Unfortunately that damage cannot be reverse and the vision will not be regained.  He did say there are medications we should consider and that contacts are very helpful for children with nystagmus.  We will talk more about these in the appointment tomorrow.  There is also a risk that about 20% of patients end up needing a second surgery...we will also ask that question tomorrow as far as when we will know.

We were taken back to see Cole about 15 minutes later and he was moaning as we walked into the recovery room.  He was unconsolable as he was coming out of anesthesia so they gave him more morphine.  He was still in a lot of pain and wouldn't open his eyes so it was hard to see if he was fully waking up.  I was able to get on the stretcher so he could lay on my chest but continued to moan until the meds finally kicked in and he fell asleep.  We let him sleep for about 30 minutes and then woke him up to get back to the Ronald McDonald House to rest.  Unfortunately he was still in a lot of pain.  We called for Security to drive us back to the house and filled his prescription before we left.  He moaned the entire way back to the house and rested on my chest once we got there.  Unfortunately his eyes are swollen, the whites are dark red, the pupils are very large and he was bleeding from his eyes.  He hasn't really opened his eyes and when he sits up he immediately grabs his head in pain.  So we're taking it easy relaxing in the room, ordered pizza and Cole convinced dad to go to the hospital gift shop and get him the super hero figure he wanted.  I redosed his Tylenol and later his hydrocodone and he seems to be feeling much better.  He and dad have been playing with Batman and Robin for the last half hour.  We meet with the doctor tomorrow at 9am and will then head back to VA.  More tomorrow night with next steps!